View Full Version : making decisions about elder care
i've mentioned on other threads that the last month or so with my grandma has been really rough ... she had a heart attack in mid-august, was in the hospital for 12 days, and has been home for about 2 and a half weeks at this point.
we had been seeing a lot of progress until earlier this week. she was getting a little stronger (though still quite weak), seemed interested in what was going on around her, and was just getting a little bit of herself back each day.
but this week something seems to have changed ... she has hardly been eating anything (like, probably less than 500 calories a day). and her mind is in very bad shape. she's having a hard time remembering which pills to take when, doesn't really seem to understand what we are saying to her, and repeats herself a lot.
then last night in the middle of the night, she got up to go to the bathroom, lost her balance, and fell over the side of her chair. she seems okay other than a few scrapes and such ... but it really rattled her and it's rattled me, too.
if i sit with her and tell her to take bite after bite, she will eat. but when i'm not there, any food i've brought her just sits there untouched. it's like she forgets that she was eating, and she has no appetite to remind her, so she just zones out.
i feel like such a jerk sitting there trying to get her to eat, saying over and over again "OK, just take another bite" ... but i don't know what else to do. she's 88, and honestly i just don't know how hard to push her to fight for her life.
i'm also unsure how to make decisions about what's going to be best for her. there are 2 paths: one is to keep her at home and the other is for her to go into a medicare nursing home.
the 2nd option frankly terrifies both of us ... but at the same time, she is not thriving at home. her doctor is nice and good but i think he is not sure what else to do to help her. basically he just tells me that she is very weak and she needs to eat and exercise. doesn't seem like we are capable of making her do that.
and honestly, part of me also wonders, why should she struggle so hard? so she can sit in a chair the rest of her life, in pain, waiting for someone to come see her?
i guess there are a couple questions here -- the logistical and the existential.
my plan at this point is to spend as much time with her as i can this weekend. then on monday i'm going to call this place (http://www.lifepittsburgh.org/) to see what they suggest. some other folks in the building she lives in (in the same neighborhood as me and my brother) are part of this group and they say it's great. fingers crossed they can help ...
i'm positive that many of you have been in the same position ... and i guess i'm just looking for some guidance / stories / ideas. help?
madge, my mother stopped eating, too. That was the last step before she died.
There is a lot I could say about eating and my mother's experience and I'm not sure how much of it is relevant to your grandmother's situation. So here goes:
When my mother lived in her house, after she had been diagnosed with Alzheimer's Disease, she didn't eat even though we provided food for her. She got very skinny. She went into a nursing home for an unrelated health issue and SURPRISE! She gained weight and even got a little chubby!
She was like that for about 5 years, then she sort of stopped eating on her own and was in the state of your grandmother. We put her in Hospice care which means she's got less than 6 months to live due to the "failure to thrive" diagnosis. If officially enrolled in Hospice care, Medicare will pay for a patient to be hand fed. That surprised me! But apparently, it's cheaper in the long run since there will be no more expensive procedures tried on the patient. So, someone came in to feed my mom once a day, as you are doing. It took about 1+ hours. The nursing home she was in didn't have that kind of one-on-one time.
She lived like this for about a year (yes, beyond the 6 months prediction!) getting one square meal a day.
Then my mother stopped swallowing. That was the beginning of the end, and a few weeks later she died.
Philosophically I think it's fine to let elders go when they stop eating. That just seems like Mother Nature shutting their systems down. I don't see a practical point to dragging it on.
But the medical community seemed to, in the case of my mother, expect to carry on longer than perhaps I would have had it been solely up to me.
you'd need to look into various liability issues -- but hospice care might be the way to go IF the doctor has no other diagnosis or suggestions. i think the hand-fed, one meal a day thing might be ok, and it's in your home (i assume) or hers, which would work out.
i would consider moving elder relatives into my home, personally, though right now that's not possible. i've talked to immigration about it -- particularly with my grandmother and my husband's grandmother. both have dementia. my grandmother is in assisted living, and my husband's grandmother is in a higher-level of care assisted living (eg, a locked ward, people bathing her and taking her to the dining hall and various activities). my GMIL does have my MIL and FIL visiting her every week and their place has a lot of activities (every day they have an activity, and my GMIL goes to one activity per day -- usually youth group choir, play, and similar events, and then there's the friday games with young people as well).
my grandmother isn't in such a place. she has plenty of activities, but she doesn't get any visits from my uncle (who lives close to her, my mother lives across the country). she misses being around younger people and she misses family. My aunt (GM's sister) visits her about once every month or two, and we all call her regularly -- but she doesn't remember, so she feels very lonely.
moving her here would not be easy on us, but she would be able to financially contribute. Also, she'd have to sleep on the twin bed in the lounge, which she might not like -- i don't know. And, I'd have to find something for her to do -- but our town is walk-able with beach, beautiful little hill-side hike, a small corner market, two cafes, and two churches that have activities that involve children that she could volunteer (eg, they have singing mornings and a singing and dancing morning for mums with babies under age two/three and she could help out with this and be with the littles). She wouldn't be able to do it on her own, but she'd be fine otherwise. there's also a garden club and several others, and she'd be able to take the bus to the pool for her water aerobics.
i'm just not sure, and immigration says we can't bring her in unless we are citizens. that will be years. so we shall see.
domestic goddess
9-17-11, 6:35pm
If you have a gerontologist in your area, that is certainly someone to consult. After he has seen your grandmother, he can advise you, and help you make a plan. Not everyone who stops eating is ready to die; sometimes other disease processes play into that, and can be helped. If she is alone a lot of the day, maybe she just needs some socialization to perk her up a bit.
The meds some people are given after a heart attack can be very hard on them, with difficult side effects. I wouldn't have believed how bad they could make you feel until after I was hospitalized in April with severe hypertension. It has taken me until now to get over the side effects, and I still have days where I just am not worth much when I get up. A gerontologist can review her medications for drug interactions that may be affecting her alertness.
I hate to see people sitting in a chair, just waiting to die. Sometimes they are not really at that point; but you need trained personnel to help you make decisions. Look for them, and use their expertise.
Just make sure she doesn't have a urinary tract infection. Those can really affect older people and make their behavior quite different.
I would make a referral to Hospice. Medicare all of it, you get a team of professionals, who will take wonderful care of her and give family members guidance. It sounds to me like she is at the end of her life and deserves compassionate care.
Best wishes to you in sorting out the best answer for your family. I've watched my grandparents go through this - one grandmother currently in the hospital after a minor stroke, being run through a gauntlet of diagnostics that won't really do much for her as far as I can tell - and all I can say is - there doesn't really seem to be a good answer, just one that is the best of the choices available for a given situation.
My mother worked in elder care for many years. One job she had was a resource person for a large company to help employees make the best decisions for their elderly family members. You may want to check for that resource with your employer or the local seniors resource center. This can be a complicated decision and the people I have known are very knowlegable and understanding of the whole family situation.
Good luck
Is she on oxygen? If she has heart issues and her oxygen is low, that could explain the lack of eating and neurological issues. If she has actually been checked out by a doc and had her blood ox tested and it's fine, then maybe she is on the downhill. It seems strange that she had been getting better and now is having problems...possibly she had another minor heart attack or mini-stroke or something else. Also, is she hydrated? Dehydration is common in elderly esp if they aren't eating much either. Be aggressive. If it's her time to go, it's her time to go. But going from getting steadily better to a sudden drop sounds like it *could* be something fairly simple but overlooked. Only a medical professional can tell for certain but it sort of sounded like the doc was brushing you and her off. I'm not for super-heroic measures but if it's something relatively inexpensive and would greatly increase her quality of life the docs should explore those fully before throwing in the towel.
thanks so much for the input. just to answer some questions, she is on oxygen as needed ... but the doc says that technically she doesn't need it, because her blood ox levels are fine even without it. it's more that she feels out of breath so she wants it.
if i could bring her into my home, i would. but she can't do steps, and our only bathroom is on the 2nd floor. my brother's apartment is on the 2nd floor as well.
it's possible that some other medical event did occur last week -- she had dry heaves badly one day, and that's the day she stopped wanting to eat. at least part of it seems to be mental. she has it in her mind that if she eats, she's going to vomit (though that hasn't happened) and for some reason she's very scared of it.
am going to call the life pittsburgh folks tomorrow and see if they can do an evaluation quickly.
Please have her urine checked. A UTI (urinary tract infection) can cause these symptoms in an older person.
That being said, she has lived a long life. It sounds like she might need more than you can give her, just in keeping her comfortable. Good luck with whatever you choose to do. Its a difficult time.
if i could bring her into my home, i would. but she can't do steps, and our only bathroom is on the 2nd floor. my brother's apartment is on the 2nd floor as well.
As someone who has been through the caregiving experience with my parents, I'm very impressed with your ability and willingness to take charge of your grandmother's care as a young person.
Sorry to hear about your grandma. I know you are close to her from previous posts. It must be hard.
My mom is 82. She lost 10 lbs in six months. Mom told us she "forgets" to eat. Unlike her. Finally got her to doctor and her blood test shows low sodium and low potassium. Since she has been under recent doctor's care, I'm sure they have checked those. If you look at symptoms for low sodium it is huge...loss of appetite, nausea, dizziness were to ones my mom had. She is eating canned soup (they want the sodium from diet) and her potassium. Her voice is stronger, she has gained a few pounds and she has an appetite. I was surprised. (After all these years of harping at people not to eat salt, then this. My friend's mom was in her late 80's and didn't do doctors but when some crisis happened they took her in. She was diagnosed with low sodium too).
I second the concern about urinary tract infection. I had an elderly friend and learned that those infections are often symptomless in elderly but they do get cranky and affects their thinking among other things.
madgeylou
9-18-11, 10:01pm
rose, that is really good to know -- in the hospital, they said she had low sodium. she had some canned soup yesterday and did seem to be a bit better today. i'll fix her some more tomorrow and ask the nurse to get a sample to test for a UTI, too.
thanks so much for your ideas, everyone. it's just good to hear from experience.
One other thought, I went through this years ago with both sets of parents. Dehydration can cause a lot of mental issues.
Make sure she is getting plenty of water. Also see if you can get her to drink the liquid nutrients I forget the name but it's like a milk shake
that's filled with vitamens.
Will keep you in my thoughts and prayers.
Mrs. B
Miss Cellane
9-20-11, 5:56pm
Almost any infection, not just a UTI, can cause confusion and lack of appetite in the elderly. We saw this with my father--the infection caused no temperature or other normal changes that would signal an infection. Took a week the first time to figure out what was going on. When it happened a second time, well, I seem to recall yelling at a doctor who was telling me that Dad just had Alzheimer’s and I was too close to him to realize it. I was not always the most polite advocate for Dad.
But it was exactly the same thing. Making all Dad's favorite foods and basically sitting there either feeding him or coaxing him, "How about three bites of the egg, Dad? Maybe one more? How about another?" It was exhausting. He ended up hospitalized, and the hospital dietitian was wonderful--asked me about his favorite foods, told me to order whatever he wanted to eat at any time of day or night. But it was a struggle for me the entire time.
poetry_writer
9-20-11, 6:03pm
My heart goes out to you, I know what a tough thing this is to go through with someone you love so dearly. My mother was put under Hospice care when she quit eating. they call it "failure to thrive". She couldnt swallow and we chose to keep her at home. Hospice was SO helpful. We decided, as a family, that we would not attempt to make her try to eat. She took only liquids and then quit taking that. She went to heaven from the house she had moved into as a young bride. It is ok to allow them to refuse to eat, but I know it is very hard. Blessings to you.
From my experience with my older relatives, I have constantly been amazed at how well they can often bounce back from physical set backs. I can recall a couple of instances where older relatives would loose appetite at times, but get along fairly well on high nutrient drinks such as Ensure plus small amounts of food while regaining strength.
There is a difference between not being able to eat or totally forgetting to eat due to dementia, and a loss of appetite due to medical issues or medications.
I also think that after a major illness there is a tendancy for older people to fall into depression, which sometimes can be helped with medication.
If she was making progress and then suddenly started deteriorating, I would have her checked out by another doctor, preferably a gerontologist. There are many things that can cause mental issues with seniors, including decreased kidney function, medication interactions, too much (or too little) of a certain medication.
yesterday around 11 am, the visiting nurse called me and told me that ma's blood pressure while standing was way too low (something like 68 over 40?) and that she wasn't safe home alone and that we should get her to the hospital.
so i called 911 and the paramedics came (and acted like giant douchebags, but that's another story) and they admitted her last night. she is still very weak, not eating ... but she seems to have slept quite a bit and she slept all morning when i was there today.
i met with the social worker and we are going to place her in a manor care/rehab facility, hopefully just for a few weeks until she gets some strength back. the doctor really wanted us to do this when she came home the first time, but she was terrified and i was inclined to at least try to care for her at home.
at this time, i feel that was a mistake ... it is hard to admit, but she needs more care than what i can give her. :(
i did some research and talked to some different folks and we have her a placement in one of the "better" manor cares (whatever that means) so she will probably be going there monday. i spoke with her about it this morning and she seems to understand and be okay with it.
it's all so hard. i'm really hoping she can bounce back a little and come home.
thank you for the update, madgeylou, as I was thinking about you both.
First, i think it is very courageous of you to really honor your grandmother and yourself by offering your best and trying to take care of her -- even though you now know that it was too much for you at that time.
Second, it sounds to me like you are doing everything right, and that putting her into manor care (my GMIL went to manor care in lancaster before moving to assisted living -- it was really good) to make sure she gets put to rights before moving back home is a really good decision. She does need to get back to a place where you *can* care for her, so that you can do what you really want to do for and with her.
I think that what you are doing is exceptional. I think that you should be very proud of yourself, proud of what you are doing, and have confidence that you are offering your best to your grandmother during her end-of-life care. That might be, btw, another decade or two, or it could be several months -- but whatever it is, you are doing a very wonderful thing for yourself and for her.
So, compost any guilt or upset you may feel, and just keep moving forward, taking good care of yourself, and offering your best to your grandmother.
thanks so much for your kind words, zoebird. i can't tell you how much they mean to me. i am lucky to have a partner who's been taking excellent care of me, as my natural inclination is to throw any semblance of healthy eating / good sleeping habits out the window in times of crisis. he's really been holding it down for me so i can be there for ma.
you said it beautifully -- i do want to offer my best to my grandma. i want her to laugh at "dancing with the stars" and read her beloved trashy books and tell me stories about when she was young while i paint her nails. i am willing to do the heavy lifting on her physical needs, too, but obviously there are limits to what i'm capable of. right now, she needs help beyond those limits.
anyway, thank you, zoebird. your kindness has really helped me tonight. :)
also, thanks to the folks on the thread who mentioned low sodium and UTIs. as it turns out, she had extremely low sodium AND a UTI. so maybe in a day or two as those are addressed, she'll start feeling better. fingers crossed.
Big hugs, Madgey. Don't feel bad. The quality of life of many elderly who live in some sort of nursing home often goes up as they are getting better nutrition, medicine and social stimulation. That's not to say that the goal is to warehouse grandma there but it sounds as if she needs more medical oversight than what can be provided at home.
Madgeylou,
Don't feel bad. You were trying to honor your grandmother's wishes. But now you know she requires more care and you're handling that. Hopefully with the UTI and sodium levels treated, she can resume her recovery and you will be painting her nails again soon. :)
I was pleased to get an update and hear that there are some curable medical issues that will improve your grandmother's health. That is good news!
iris lily
9-24-11, 10:40am
Madge, that's great that this setback was from relatively easy issues to solve.
Madgeylou. Thinking of you and sending additional hugs of support.
thanks everyone. got a quick update for you: she's in the manor care facility now, and last night when we left her she seemed to be doing OK. but after we left she freaked out -- accusing the night staff of drinking/partying/groping her in the middle of the night, using names to describe them that were barely acceptable 50 years ago, telling me "they just ignore me! they won't let me put on pants!"
she's terrified, i know. but at the same time, it's so frustrating that she keeps telling everyone she's going to go home. it's frustrating that she even WANTS to go home. seriously, i tried to think this through with her, asking her, "OK, well what would be better at home? how would you get better at home? do you remember this time last week, when you were at home, at death's door?" but she can't seem to think it through. her brain is way mushier than it was even a month ago.
so now i'm the bitch because i won't let her go home. the catholic guilt thing is coming into play now, too. "i know you are busy, you just wash your hands of me." she's reaching out to my brother and sister-in-law because they will indulge her craziness more than i will. or maybe they are just more compassionate. i'm not cold or unfeeling by any means, but i am rational and this situation clearly is not.
also, my crazy drug addict sister is talking about coming up here to take care of her so she won't have to be in "that place" as though we've banished her to a dungeon at the bottom of the ocean or something. meanwhile, this place is *really* nice! every single person i've talked to there (at least 10 staff members and several people who've been there getting treatment for a while) has been very polite and empathetic. when i went there last night, there were people scrubbing the baseboards -- it's clean and bright and the patients are well-treated.
i am just trying to rise above all the drama. i am hoping that after a few days she can adjust and get into the flow of the routine there and see that it's doing her some good. either way, there's only one way for her to go home, and that's to get better.
fidgiegirl
9-27-11, 5:40pm
Uf, madgeylou, no fun!
The way grandma is talking to you reminds me of the way my grandma talks to my mom and aunt, but she is only mildly cranky with us, or even sweet as pie. Here's my theory - she knows they are going to be there for her no matter what. They are not going anywhere no matter how cranky and mean she talks to them. Us grandkids she's not so sure about, so she kind of plays it easier with us. Anyway, that may or may not be what's going for either us or for you, on but your situation reminded me of it.
(((madgey)))
My mom called me a moron because I told her that she couldn't leave the nursing home...that really cut deeply, I went home and cried in my husband's arms. A nurse on the way out gave me a very compassionate look which helped. Perhaps you can talk with the care center's social worker to get the phrases that will help her and your other family members understand that this is the best place that she can be. Madgeylou after my mom died, many, many people came to me and told me how much help I was to her in her last months. Sometimes the nurses social workers, families say things like "when you can get up and use the bathroom by yourself ...or ..when you can stand up long enough to cook your meal or tidy your kitchen...Then we can think about your going home" might be helpful. I'm just trying to help you sorry about the blathering.
thanks, fidgie and merski. fidgie, that makes sense ... much like a child can be more horrid to a parent than they would anyone else, maybe she just feels safe taking this out on me. i am a really logical person, though, which makes it hard for me to continue to nod and be empathetic when she's talking total bollocks. i just have to let it go in one ear and out the other, i guess.
and, merski, please don't think for a moment that you are blathering -- it's so helpful to hear your story and know that i'm not the only one who's gone through this! i'm sorry that you had such hard times with your mom as well.
i hope that, in her heart of hearts, my grandma knows that i love her. i'm just trying to remember that she is scared, and her mind isn't working the way she is used to ... and i just can't take any of it personally.
often, when children are forced into foster care (which, of course, children always are), they have a strong reaction to the whole situation, and a strong desire to go home. it is major drama for them, very intense.
just keep your mind clear on this -- she is acting out and it's ok. she's upset -- and why not? it makes total sense for her to be upset. Remember that you are doing what you can do right now, and yu can tell her that when she is capable of coming home, then she can come home. but she can't until she is healthy enough for it. that's all this is -- not imprisonment, not trying to get rid of her, but really, to make sure that she is healthy enough to come home and be able to stay home!
i know it's a lot of drama. and i know it's hard. you can do it.
iris lily
9-27-11, 10:19pm
hey madge, I remember that my mother's reaction was the same in the nursing home about the night noise. I put it down to her not sleeping very well with unfamiliar noises seeming louder than she was used to at night. Also she claimed weird things like the pants issue. But my mother had a diagnosis of Alzeimer's Disease and so it was rather easy ignore what she reported, poor woman!
Oddly, she did not blame me for being in that nursing home, she acted as though we had a common enemy. Perhaps in her mind she was blaming my brother, it was never clear to me and I didn't pursue it, I just nodded sympathetically when she talked about being sprung to go home.
The concept of Home is important to most domestic creatures, not just human, but dogs and cats, too.
OK, this is the hospice nurse talking, and she may not be ready for this yet.....BUT...when people start talking about "going home"....sometimes they want to go to some physical place they have lived before.....and some times "home" is an obscure reference to a spiritual home, an afterlife. There is an excellent book about the topic "Final Gifts" still out in paper back.
Just sayin'
And (((hugs mageylou))) it's hard to have someone you love so sick.
The good thing is that she probably won't remember this should she recover enough to go home someday.
Don't forget to take of yourself during this very stressful time. It's easy to overlook this.
Regarding your grandmother, are there any small items from home she can bring to help? Pictures? Knick knacks? A favorite item of clothing?
madgeylou
9-28-11, 12:22pm
i spoke with her this morning, and she seems more lucid. and she says that she is going to try really hard in therapy so she can go home. thank goodness!
you know, i found out last night that they didn't give her an ambien the first night, and my understanding is that coming off ambien can make you seriously crazy ... so am thinking that might've contributed to her freakout ...
Hi madgeylou,
My MIL has Alzheimer's, which isn't what you're dealing with, but your grandma's non-lucid moments sound fairly similar. I think it's pretty common for a confused elderly person to lash out at the person they are closest to when they are scared or frustrated. My MIL was always sweet to DH and I, but she could be very, very mean to my FIL, sometimes even physically violent (fortunately, she is tiny and FIL could easily fend her off). The night confusion is also fairly common. A few months before MIL was diagnosed, she was hospitalized to have a pacemaker put in. We found out later that someone had come to get her for a scan fairly late at night, but she was convinced someone had tried to kidnap her and there was no convincing her otherwise.
Hang in there. It's not easy, but hopefully your grandmother will regain her mental faculties as her infection and low sodium are corrected.
spent some time with her last night, and she seems so much more like herself. her short term memory is still not right (she keeps repeating the same thing she told us 5 minutes ago, asking the same questions, etc.) but she seems much more like she did when she first came home from the hospital last time. that first week she had made steady progress until, i guess, the dehydration and UTI got to her.
she said she had a good time in therapy, too, and that it felt good to use her body. so i'm very encouraged. gonna go over and paint her nails for her tonight. :)
thanks again for your support on this thread, SLN friends. it has helped me so much. i'll keep you posted on how we get on.
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